Month: November 2018

8 Things To Do When MS Makes Winter More Painful

21 Comments / Dysesthesia / January 20, 2021
Please don’t make me go outside.
 

8 Things To Do When MS Makes Winter More Painful

A lot has been written about heat intolerance and MS, and yeah, put me in a hot bath and I’m al dente in 6 minutes or less. But somehow, even in that bath, my feet manage to maintain a corpse-like grey and still feel cold. If you have MS, the heat might mess you up, but feeling cold can be its own kind of torture. 
 
It’s called Dysesthesia. Like a twisted game of Telephone, it happens when damaged nerves send inappropriate messages to the brain. It can feel like pins and needles, an electric shock, cold, or burning pain. 
 
Just like everyone’s MS is different, so is everyone’s MS-related Dysesthesia. For me, it means that regardless of room temperature or time of year, whenever my nerves decide to drunk-dial my brain to talk about their feelings, my brain (who doesn’t speak Vodka), decides I’m cold. And not a cute, ooh, I’m a little chilly, let’s get cozy kind of cold. Screw you. It’s a bone-deep, painful, unholy Arctic chill, that ironically feels more like being on fire than anything a sweater could solve. 
There’s nothing cute about this look.
 
Or this one.
My attempts to cope with this constant confusion include fully-clothed visits to the sauna in my building, regularly blow-drying my body, and buying coffee just to hold the cup. I use the car seat-warmer in the summer, wear down-filled, outdoor camping booties in the house, and my most recent Make-A-Wish is to have all the hardwood ripped out and replaced with heated floors, because my feet, by far, bear the worst of it. My toes look so disturbingly undead that whenever I get a pedicure, the aesthetician tries to scrub off the remnants of what she assumes must have been blue polish. 
Someone at the MAC counter asked if my nose is red because I drink. Rude. My mom knit me this itchy AF beak blanket because my nose is THAT cold.
All of these strategies are bullshit, of course. I’m still Jack Nicholson at the end of The Shining cold. While there are medications that can help treat these sensory mind-fucks, I haven’t found any that work for me. But talk to your doctor, because everyone’s MS is different, and as every fangirl knows, winter is coming.
 
Don’t let anything come between you and your garbage fire.
 
The good news is, while it might feel like my flesh is dying, there’s no actual tissue damage occurring. The bad news is, this kind of pain is hard to understand and can make you feel like your own brain is trying to gaslight you. Don’t expect much validation from medical professionals either. MS doctors know you have bigger things to worry about, like being able to walk, and see – I once had a neurologist tell me that eventually menopause would take care of this symptom – he thought he was hilarious, and sure, he did look like a muppet; but sometimes it’s the sensory that can have the biggest impact on day to day quality of life.  
 
Dysesthesia is no joke, Dr. F.
 
I was born in Montreal and live in Toronto. That’s Canada, bitches. The capital of winter. But just because winter is in my DNA doesn’t mean I have to love it. I don’t. I hate winter. Hate is a strong word, and Jack Frost can go to hell (but like, save me a seat, cause it’s warm there). It’s not just the cold. Negotiating a rollator on unploughed sidewalks sucks. Bladder urgency is not conducive to 30 layers of clothing. Chapped lips, insufficient sunlight, salt stains, and static cling all leave me asking myself Why the fuck do I live here?

diversity, healthcare, opportunity, freedom, food culture, regular culture, brunch culture, friends and family, maple syrup, tolerance, Tim Hortons…

Oh right.  #sorry
 
I can’t love winter, but I can try to hate it less. In my next life I’m coming back as the surface of the sun, or Fat Elvis, but until then, I want to learn how to embrace the season without freezing my actual tongue to a pole. I’m trying to adjust my attitude by focusing on appreciating the positive things you can only really do in winter. With that in mind,
 

8 ways to make winter suck less with MS:

Winter food

Strawberry shortcake and sangria are over; let it go. And while no reasonable person looks forward to brussels sprouts, beets, cabbage, or any of the gross things that grow in tundra, it doesn’t mean you can’t eat your way through winter. Comfort food is the solution, and if you can get someone else to make it, even better. I’m talking shortbread cookies, beef stew, mashed potatoes, mac and cheese, grilled cheese, cheese fondue, basically anything with melted cheese. 
 

Drink through it

Two words: Seasonal Lattes. Call me basic, but there’s something seriously soothing about a candy-cane cup of caffeinated warm milk. And only in winter can liquid chocolate be considered a legitimate breakfast food. Adding Irish cream, Kahlua, or Peppermint Schnapps to your afternoon coffee seems like substance abuse in the summer, but when it’s dark out at 4:30? Fair game.

 

Let yourself go

Don’t even worry about what all this extra eating and drinking is doing to you. Nobody can tell what’s going on under that snow-suit, and did I mention it’s dark? Now’s the time to embrace winter weight, stop shaving your legs, or giving a fuck; that’s spring’s problem. You don’t have to wear pants with a waistband anymore. If you do have to leave the house, wrap yourself in a blanket scarf, and suddenly you don’t look derelict, you look European. See you in April, bra.
 

Make like the Danes #hyggelife

Despite living in a damp, sunless country, the Danes have been shoving their happiness down our throats since happiness lists were invented. From the land of Lego, stylish mobility aids, and dogs that look like tiny horses, comes Hygge; the hug you can give yourself. If you don’t know about this culture of candles and coziness, I don’t even know who you’re following on Insta; but if you’re like me and you love a trend, a quick fix, and the North-American commercialization of a pure, simple tradition, Hygge is for you! 
 
Denmark: We’re better than you.

Make your friends come to you

The best thing about condo life is never having to shovel snow or take out the garbage. The second best thing is having neighbours that become good friends. My building buddies and I can come and go between our apartments in our pyjamas. It’s like living in a dorm but without the academic consequences of weeknight wine-drinking, and nobody has a Che Guevera poster on the wall. Between board game night, movie night, and Ubereats, I literally never have to go outside. (Wait, don’t you have a dog? Yeah, that’s The Banker’s problem.)
 

But actually, exercise

Before cabin fever turns you into a murderous recluse, realize that exercise is not only essential for your physical health, it can also have a powerful effect on mood. If you’re one of those people who actually enjoys cold exercise winter sports, congratulations, you’re better than me. For everyone else, figure out a way to move. The MS Gym has free online tutorials with workouts every MS’er can do at home at every level of mobility. 

 

Check yourself

Seasonal affective disorder (SAD) is a real thing that can exacerbate depression, making winter particularly difficult, and those of us with MS are at a higher risk. Meditation, those fancy light lamps, cognitive-behavioural therapy (CBT), and certain medications can help. If you’re more than a whiny, winter-hater like me, and feel legit depressed, don’t suffer; talk to your doctor. 
 

Consider that not all squash is gross

If you’re still reading this terrible advice, I feel compelled to provide you with a recipe that’s a little more in-line with a healthy MS lifestyle than the suggestion you stay in bed with an electric blanket, a bag of Miss Vickie’s chips, and all 7 seasons of Gilmore Girls. Seriously. Don’t stop your Wahls, your OMS, your Swank, or whatever MS wellness plan you’re following just because some rando on the internet tries to rationalize day-drinking your way through winter. 
 
This butternut squash and Italian sausage soup is gluten-free, and dairy-free. And not on purpose either! Take out the sausage and voilà, it’s vegan!

It doesn’t taste as good as summer feels, but it’s pretty darn close.
 
 
Roast a butternut squash.
 
In a soup pot, sauté some Italian sausage out of its casing, then add onions, carrots, celery, garlic, whatevs. Maybe a smidge of apple cider vinegar if you feel like deglazing, but does anyone actually do that?
 
Add roasted squash, a handful of fresh sage, several cups of stock, and a glug of maple syrup (obvi the real stuff, I hate winter, I don’t hate Canada). Bring to a boil, then simmer until you feel like it. 
 
Purée. 
 
It’s 102 days until spring. Stay warm, Trippers.

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The Pain And Anger Of Being Excluded For Having MS

18 Comments / Relationships / July 20, 2020
I could list the ways I’ve been left out, treated differently, or whatever gentle words you wanna use to describe being dissed and discriminated against for having MS. 
 
There was the New York City girls trip that happened in secret, because I might have ‘slowed them down’. There were professional opportunities for which it was assumed I was ‘not well enough’. There was even the chance to be in a docu-drama and reality series that I was forced to forgo once my diagnosis had been disclosed.
 
But none of these indignities comes close to impacting me like the gut-punch that came with the first time I felt othered for having MS. 
 
When I was first diagnosed I worried about what would happen to my body, natch, but I never considered people would treat me differently. My obnoxiously confident younger self had no idea I’d just become that girl with MS, and was thus protected from feeling reduced by my disease, at least for a little while. 
 
The first year AD (after diagnosis), as I struggled to come to terms with my new reality, I found comfort in a network of support. I had good friends who rallied around me (the epic NYC diss still a few years away), my employer was accommodating; and sure, I had a break-up or ten with my on-again, off-again bf, but I didn’t think that had anything to do with MS, break-ups and drama being part of the deal when dating a bartender with a soul patch.
 
Fast forward a couple of years AD. By now I was rocking the whole invisible illness look. The shock of my dx having worn off, my employer stopped feeling sorry for me and started giving me the side-eye of doubt for taking so many sick days. Things were getting trickier for me at work, but my relationships were better than ever. 
 
In fact, my Justin and Selena situation with The Bartender was in an on-again cycle, and I was starting to think things were actually getting serious. Except for one thing. I was never invited to his house, where he still lived with his parents. For a long time I didn’t notice this slight. I mean, I wasn’t exactly interested in seeing this guy’s childhood Lego collection, and it made sense for us to hang at my apartment where there was unlimited vodka and no chaperones. 
 
Then came Easter.
 
I knew all about The Bartender’s complicated, symbol-heavy, Ukrainian Easter tradition. For weeks leading up to this particular year’s dinner, I’d been not so subtly gunning for an invitation to the main event, under the pretext that I’d wanted to see for myself just how strong you have to make homemade horseradish to invoke the passion of Christ. Of course, I was only pretending to care about Paska and whatever the hell Pysanka is. I needed to know Soul Patch was serious, and that meant meeting his damned parents. But every time I referenced the Resurrection, The Bartender found something else to talk about. 
 
By Good Friday my weekend was still wide open. I determined he just wasn’t into me, and we needed to break up. This time for good. I was pissed at his cowardly inability to just come out and say what seemed obvious. So, I confronted him. 
 
I fully expected to hear some excuse about how he wasn’t ready for a commitment and blah, blah, bullshit blah. But when I asked if my invitation had been lost in the mail, he was defensive and evasive. He didn’t want to break up, but I couldn’t come to dinner either. He refused to tell me why.
 
You already know what was happening here, but I didn’t. When I insisted he tell me what the eff was going on, he confessed that his father didn’t approve of our relationship. Uhm, what?
 
Growing up I was the kid other people’s parents wanted their kids to hang out with. A straight-A student, mature like a boss, I was a modern day, Catholic school, female Eddie Haskell.  
 
So, even when The Bartender said, “What’s the one thing you have that nobody else does?” I literally said, “RED HAIR?” 
 
I was that fucking clueless.

I made him say the words, not because I’d needed to hear them, but because I honestly didn’t know how someone who didn’t know me could possibly disapprove of me. It’s not you; it’s me your MS. 

Not exactly a WWJD attitude if I’m remembering my Sunday School correctly.
.

The Bartender didn’t want to tell me, because he was trying to protect me. And when he spelled it out with those two vile letters – MS –  I was devastated. 

In the months that followed, whenever I would tell this story, I’d feel wounded all over again by the number of people who sympathized with The Bartender’s dad, telling me he was just trying to protect his son. My hurt feelings turned to alarm when I realized this wasn’t an isolated attitude. So many people were comfortable telling me how scary it would be to contemplate a future with me – like I was expected to roll over and accept that I’d become a poison to be avoided at all costs. How could I go through life thinking of myself in this way?
 
I couldn’t. I wouldn’t.
 
I know I can’t convince someone else of my worth, but I sure as hell can convince myself. I dug in my heels and refused to believe I was any less of a prize than I’d always been. I refused to accept that because I had MS, I wasn’t just as entitled to my happily-ever-after as my mother had always lead me to believe.
 
In the end, we didn’t break up. The Bartender held his ground with his father, while his mother sent me secret notes, letting me know I had at least one silent ally. And then, the following year, like the Ukrainian kielbasa that symbolizes God’s favour for some reason (look it up), I was unexpectedly invited to the Easter table.
 
Halle-freaking-luia
 
Eventually, The Bartender became The Banker and by the time we were married, his dad had come around. We never talked about the stand-off; they’re not that kind of family, but The Banker’s father danced with me at our wedding, and welcomed me to the family. 
 
Unexpectedly, one year later, my father-in-law died. I’ll never know what changed his mind about me, but I’ll always be grateful for his blessing on his son’s choice of bride, and for his willingness to open his heart to me.
 
I know there will always be people who believe it’s acceptable for a father to try to prevent his son from being involved with someone with multiple sclerosis – even that it was the right thing to do. And that’s okay. I’m sure there are lots of people who don’t think they could handle having a partner with MS; a partner like me. That doesn’t make me less-than. 
 
It makes them not enough.  
 
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